bipolar

Keeping busy but not too busy! #recovery

~ katcopley ~ Leave a comment

I haven’t blogged for a while mainly because I have been mega busy! I am really enjoying being well however at the back of my mind is a nagging worry that won’t go away. I am worried about getting ill again and that this exceptionally busy period that I am having at the moment ( which I hasten to add is very enjoyable) might prove to be a trigger. I find myself regularly checking for symptoms and lying awake thinking about my day and whether there are any signs that I am going downhill that I missed.
Thank goodness that apart from being tired which isn’t out of the ordinary I am definitely not feeling depressed or even low, I am not overly anxious and have no hypomanic symptoms.
Due to the fact that I have this constant nagging worry & the fact that looking after myself is so important I have come up with a few things that I am going to do everyday. I am hoping that these things will lessen the worry and reassure myself that I am doing ok. My list so far is:

-Letting myself have a short ‘Worry’ time each day and then try to leave my worries for the rest of the day.
-Have at least half an hour (hopefully more when I am less busy) of ‘me’ time each day where I write a blog, read or watch TV.
-Have regular breaks at work and make sure I eat 3 times a day
-Talk to family and friends and listen to them if they think I am overtired or if they have any concerns
-Remind myself of my WRAP regularly but without obsessing about possible symptoms

I have come such a long way over the past month or so and I am hoping that this will continue for the foreseeable future but I also don’t want to be dragged down everyday that I am feeling well by worrying about getting ill.

It’s a WRAP!

~ katcopley ~ 3 Comments

I thought I would write a blog about my Wellness Recovery Action Plan (WRAP) as this has been a great help to me and although it isn’t for everyone it might help people to read about mine! I also find that it reinforces mine to myself and than can only be a good thing.
Mine might not be the method everyone uses but it is one way:

Wellness Tools:
(Activities I enjoy or that help me feel better)

Spending time with husband & family
Talking to Friends/Socialising
Mindfulness
Going to Church
Keeping a routine
Using my light box
Reading
Singing
Watching things on TV I enjoy
Listen to music
Doing things I know I can do
Write a blog
Chat on Twitter

Daily Maintenance Plan:
(Things I should try and do everyday)

Keeping a routine
Eating 3 meals a day
Getting some rest
Taking regular breaks at work
Resting at home everyday
Reading for 1/2 hour everyday
Have a shower
Do something I enjoy
Keep my mind active
Mindfulness
Get out of bed everyday

Triggers:
(Identifying those triggers or events that might make me feel worse)

Tiredness
Emotional events
Seeing people that may of caused me distress in the past
Skipping meals
Too much stress at work
Spending too much time alone

If any of these triggers occur I try and implement an action plan:
I try and stick to my daily maintenance plan
Call someone on my support list
Practice mindfulness

Early Warning Signs:
(Subtle signs that I may becoming unwell)

Not sleeping more than about 4 hours
Slight paranoia
Anxiety in certain situations
Becoming very low
Spending too much money
Racing thoughts

If I notice these signs I then try and implement an action plan:
Ask for some help from support list to implement daily maintenance plan
Ask people for help and support
Try to have company where possible
Start using PRN – probably promethazine

When things are getting worse:
(What signs I should look out for when I am feeling much worse)

Wanting to sleep all day but not able to sleep at night
Anxiety getting worse & shaking some of the time
Not eating at all without prompting
Having thoughts of suicide
Hearing or seeing things that others can’t
Paranoia so bad that I can’t leave the house easily

If these signs are present then again I try and implement an action plan:
Call GP
Think about implementing crisis plan
Try and ensure I am not on my own
Talk with people who are able to offer support
Think about taking Diazepam to control symptoms
Talk to work about implementing flexible working

Crisis Plan:
Ensure that GP is involved at this stage and in discussion with me consider contacting CMHT.
Ensure I have medication to help with symptoms
Attend A&E as a last resort but ask for help from support network.
Ask for support in monitoring PRN so that I am safe
Identifying where on the scale my suicidal thoughts are.
Carry my WRAP & care plan from GP with me to show to other professionals I might meet.

This is my WRAP that works for me and helps me to feel more in control which I find really important. I constantly re-visit this WRAP and share its contents with those involved in my care. It has also proved useful at work to ensure I am supported correctly.

Some of my thoughts on writing a complaint to a health care trust as a patient

~ katcopley ~ 1 Comment

I have been thinking that I should put together some of the things that I consider and try to do when making a complaint to my local NHS trust regarding poor care. Please note these are my own personal thoughts but some people may find some of this useful so I thought I would blog! These thoughts also relate mostly to complaints made about poor mental health care.

1. I normally don’t write a letter of complaint until I am more stable than I had been during the time that the poor care took place. This isn’t always possible as sending a letter within a certain timeframe might also be a factor but it is worth thinking about.

2. I try and write some positive points about the care I received as normally because such great people work in the NHS I often am on the receiving end of some excellent care. It is vital to me to mention this as these comments can be passed on and I am a great believer in sharing good practice and hope that trusts would do the same.

3. I once went on a course about using Non Violent Communication effectively and always make sure I use these techniques when writing any complaint. The basic principle is using the ‘Fact, Feeling, Need, Request’ method of communication. State the facts, state clearly how you feel (without too much emotion), say what you need and what the request would be to meet the need. This approach is not easy and I might not of done it justice by my description here but I really swear by it and use it to help colleagues in difficult work situations as well.

4. I have a couple of good friends who often read my letters before I send them. This is mostly because I want to be factual, correct and not too emotional. Yes I want them to know how I have been affected but also not get carried away and so having someone to read through what I write is vital for me.

I would be interested to hear other tips people might have about complaining. It is vital that our voices are heard so that trusts can learn from the mistakes that are sadly all too often made.

GP back in the driving seat!

~ katcopley ~ 1 Comment

So today I went to see my GP and it was my first contact with a professional since I was so abruptly discharged over a week ago. I have really missed the support of the HTT who I saw 10 days ago and my appointment last Wednesday with my so called care coordinator was the shortest ever and certainly not a therapeutic help.
My GP was obviously surprised to hear I had been discharged and hadn’t been informed that she was now the main point of contact for someone with bipolar, just out of crisis and who had been under the HTT team only 10 days ago in the midst of a bipolar episode. She was though professional and straight away confirmed that she could see me fortnightly and also if I used the email system it would be picked up and then someone would act on it.
She also checked again with me the crisis plan and I was as always impressed with her knowledge of mental health, her trust in me as a patient and also reassurance as she knows I am very anxious about my illness and the lack of support.
Today has given me some reassurance that I was in desperate need of however it isn’t really what I know I need but it has helped me as I am less anxious than I was last night.
I now feel in a position to write to the trust about my care. It is vital to give praise where I received good care but also highlight the very damaging incidences that affected my safety and well being during the recent episode.

A blog for World Bipolar Awareness Day

~ katcopley ~ 2 Comments

So today it is Bipolar awareness day. As I sit here writing this I am once again battling to recover from a bad episode, strangely not like any other I have had before.
If I am honest probably most of my episodes are different in some way to the one before and I don’t mean just either depressive or hypomanic. Within each state of Bipolar I can experience different symptoms, for different lengths of time and each time I may learn new ways to cope or learn something new about myself but all in all they are just plain awful.
During the past year one thing has really changed for me – I have started to talk more about my experience of Bipolar, not just on twitter and through my blog but with my family, friends, at church and at work.
One thing I have learnt through this is how different everyone’s own experiences of mental illness are and that talking on twitter has shown me how everyone with Bipolar also has their own very individual experiences, symptoms and ways of ‘coping’. If only some health care professionals also had this insight too!
As far as people outside of twitter go I have talked to so many people who really didn’t know what was wrong and who might not completely understand but have shown so much support. Other people have been keen to share their experiences of family members with mental illnesses and have told me how they appreciated me talking to them about my experiences. Obviously I have had negative conversations and negative encounters and yes they still hurt so much and hopefully in the next year I can carry on working to combat mental health stigma for myself and others.
At the moment the battle goes on! I am struggling to ride the roller coaster but I know it will change however long it takes as it is so unpredictable.
I send my love, support and solidarity to those living with bipolar and other mental illnesses and I especially thank twitter for the welcome and support during the past year.

Crisis Care finished on Monday – Complete discharge on Wednesday – where is the logic?

~ katcopley ~ 2 Comments

So on Monday I was discharged from the HTT team knowing that today I had an appointment with my care coordinator in the Short Term Intervention team.
To set the background story I was discharged from MH services last May after being in the system for 15 years. After a crisis last October I was referred back to services but only to the Short Term Intervention Team (SIT Team). It was made very clear to me that this was just until March ( this month) however I hadn’t really been thinking about this having been in crisis again following an episode and only just been well enough to be discharged from the HTT.
on Monday I was apprehensive about being discharged from HTT but I knew that the initial crisis had passed and felt that with the support of my care coordinator and GP I would feel supported – little did I know that the originally plan for discharge from the SIT team was being kept to, despite my recent episode and so I am writing this with absolutely no MH support at all.
I am still in shock and I was not up to challenging this decision and didn’t for a few reasons. Firstly I know that the system has very tight constraints and therefore my care coordinator probably was not able to change the decision that was made today. Secondly I am so paranoid and anxious that I didn’t have the confidence to challenge the decision and Thirdly I really think that because I work they don’t fully understand the crisis that I have experienced and how bipolar affects me day to day so challenging might make things worse.
This all comes back to the fact that the system seems to do everything it can to push people out of long term care and into short term care when they in fact have a long term mental health condition. I acknowledge that I do cope with episodes better than I did and therefore do not need the high level support I once did but I am positive that by keeping me in the system with some consistancy would aid the recovery from episodes and mean I get crisis support quickly and not have to wait for referrals all the time.
From another perspective I feel for my family and friends who have also had the reassurance that I was being supported, monitored cared for 2 days ago but now I am back with my GP and they are also without the support network that they had.
As a governor I understand some of the challenges but the total lack of flexibility shown in my case this week is staggering and I am hoping it won’t have a devastating effect long term.

Do I make a formal complaint or not? Would welcome comments!

~ katcopley ~ 1 Comment

Over the past week I have experienced and been on the receiving end of some pretty abysmal care. The list of things that I feel I would be justified to complain about are:
*Having to wait 48 hours to receive a call after my GP highlighted to services I was in crisis.
*Being offered an appointment with Crisis team only to be told 5 mins later that I had to see my care co-ordinator first at a different location that I couldn’t physically get to.
*I then had no choice but to make the distressing trip to A and E where even though I was seen by triage quickly I waited 4 hours to be seen by the mental health team.
*When we were seen I was asked where I had been as I had been apparently called an hour and a half earlier. We hadn’t moved the entire time and proof of that would be on CCTV. We weren’t believed at the time though.
*One of the things I needed was more diazepam which I requested at the initial assessment but this wasn’t passed on to the crisis team who I was referred on to.
*At my 2nd Crisis team appointment over the weekend a lone male came to see me when it clearly says in my notes that a female must be present.
*I was refused Diazepam that I had been promised even though it is on my care plan.
*When I asked to see a doctor about this this carried out a conversation in public in reception.

I also have seen some excellent examples of our NHS which give me hope and also need to be written about:
*My GP has been absolutely fantastic and kept in contact throughout, supported me and also the doctors receptionists have gone beyond the call of duty.
*At A and E the pre-triage nurse was absolutely brilliant and ensured the triage nurse saw me very quickly even if the mental health team then kept me waiting.
*I have now had 2 excellent crisis team appointments and the staff have really supported me and finally I am getting some support.

So whether I make a complaint is my next dilemma. I am a governor of the trust so don’t want to be a trouble maker but I think it is important for me to highlight the mistakes, and the excellent examples of care. I am thinking of complaining just about the points I can prove as I always get upset when it is my word against a professionals and obviously I am never believed.
Whatever I do I want it to be constructive and ensure it makes a difference.

Trying to see some positives in what has been a difficult week.

~ katcopley ~ Leave a comment

Yesterday morning I made it to Church thanks to Mum for driving me. I also sung there and was so pleased as if I can have a good sing then that can sometimes help a but. This episode hasn’t given me symptoms of horrendous depression which I is unusual, but it has meant that things like singing are possible and I have noticed that I haven’t stayed in bed for really long periods of time. It has also meant that I think the desperation has been more intense so no less distressing an episode.
Yesterday afternoon I went for a crisis team appointment and although it started badly by one lone male nurse trying to see me on his own and a horrendous ‘appointment’ in reception with a doctor who refused to prescribe me what I am used to I did in the end see 2 female nurses who did their best to help.
Today I called my GP and she prescribed diazepam as normal and seemed completely happy that I am following my care plan regarding the medication correctly.
I was so reassured to speak to my GP and she promised we could revisit my care plan so that some of the communication problems can be improved and also decide if it is causing me too much distress seeking support with the mental health system.
I also went to work today and managed 4 hours which was just enough as I cleared a few emails, sorted some queries and slowly eased myself in. I then had my most positive appointment with the crisis team – only taken 6 days to get good support in place but they listened, understood my distress and most importantly didn’t judge me or jump to their own conclusions. It was the first appointment I had been seen fairly near the time allocated which makes a huge difference.
So I am now resting and think that I am definitely calmer, I am still sure I am doing all I can, I am not listening to those people that have been unsympathetic who should know better and I am still fighting. It isn’t great but I can see an improvement.

This Crisis Care just keeps getting worse ….

~ katcopley ~ Leave a comment

Last night one of the things I asked for at A and E was some more medication as the only thing that is really giving me any respite from the anxiety/paranoia is diazepam. I only keep a very small number of these as when I am well I might only take 2mg every couple of weeks or even less than that. When I called my GP last Wednesday she asked me what meds I had and if I had enough to take 5-6mg per day until yesterday as by then we hoped that the Mental Health Team support would be in place. Obviously by last night I was running low and now I only have 4 mg left.
Last night at A and E I explained this and the MH worker who I saw wrote down how much I was taking currently and that I needed some more. This wasn’t though passed on to the Home Treatment Team and so when I turned up today they knew nothing about it.
The other very weird thing is that they said they have no doctors within HTT over the weekend and therefore can only rely on the duty doctors on the psychiatrist wards in the same building. They did ask her to prescribe but because the mental health team aren’t my main carer’s there is no record of prescribing diazepam in the last 6 months because my GP does this.
I am pretty disgusted by this and just as I had found a small amount of stability I am putting this in jeopardy. My friend who was with me last has confirmed that we asked for the medication however the HTT even questioned this as well today. As a governor of the trust where I am trying to access support this completely baffles me and I am starting to feel that I am being targeted in someway although I realise that paranoia is so bad that I need to keep these thoughts to one side.
I am seeing the HTT tomorrow afternoon as having the contact and support is a valuable part of the support that I need but I am worried about coping till Monday with less medication.

So A and E in a crisis doesn’t get any better at all

~ katcopley ~ Leave a comment

My care coordinator called me earlier today after 48 hours from when I first called my GP. Not sure what the delay was but she said that she would refer me to the Crisis Team also known as Home Treatment Team (HTT). She then called me back and said that she had been told that she would have to see me first before the HTT could. I didn’t understand this & wasn’t happy to accept this because a) I couldn’t get to see my care coordinator when she could see me and b) I needed to just be assessed once and not twice which is what would happen. I couldn’t understand why they don’t realise that if I ask for help and kick start the crisis plan then I need to be taken seriously and certainly not given 2 assessments unnecessarily. The other problem of getting somewhere was also not understood which was frustrating.
I was therefore told that there was nothing else that could be done apart from a and e.
At 3pm my friend and I agreed that I had to go to a and e as so unwell but I was very frustrated by this. We were seen firstly by a nurse who points people to the most appropriate area and then we sat in a quieter area of the waiting room. I was seen by the triage nurse very quickly however she didn’t fill me with confidence. She called the mental health liaison worker whilst I was there and even said ‘I’ve got another one for you’! I just don’t understand why people think that is an acceptable thing to say – you wouldn’t say it about a cancer patient? She also commented on my anxiety and instead of being sympathetic she said I didn’t need to shake! Couldn’t make it up really!
By this time it was only about 3.40pm and it was stressful and exacerbated my anxiety & paranoia. We stayed in the same place the entire time and I probably lost concentration to have a panic attack but no one called us at all. About 6pm I asked whether there was any update and shortly afterwards the mental health worker (which we didn’t know who he was at the time) came and asked for someone calked ‘Helen’. It transpired that she had also got fed up with waiting.
Even though I was still waiting we witnessed the mental health worker having a good long chat and laugh with the security guard for over 10 minutes and then he disappeared. It was only when the original nurse that we saw when I walked in the door saw us still waiting and actually went and found the mental health worker that we realised what had happened. Apparently the mental health worker had been ‘looking for me’ since 6pm – it was now nearly 7.30pm. As usual it seemed that it was my word against his – thank goodness that my friend was with me so I knew he hadn’t.
I was eventually seen and he was quite an amenable man however it is so hard for me to talk to strangers and also he asked me why I had refused to attend the HTT team earlier today! I couldn’t believe that had been put in my notes when I hadn’t refused at all.
I now have a referral to HTT and they are seeing me at 5.30pm tomorrow and will be able to help with PRN meads and support over the weekend. Just seems a completely ridiculous and time wasting way of doing things. When will crisis care change.